By Clinical Informatics News Staff 

February 9, 2015 | As Clinical Informatics News prepares to attend the Medical Informatics World Conference in Boston this May, we’re reaching out to a few of the speakers to get a first look at what the event will offer. Here are their answers to some early questions about the health IT topics they’ll be presenting on at the conference.

From PatientsLikeMe, Marcia Nizzari, Vice President of Engineering and Product Development, and Director of Data Science Timothy Vaughan will advocate for the intelligent use of patient-reported data as part of the Coordinated Patient Care, Engagement and Empowerment track. (Monday, May 4, 11:35 am.)

Anne Lara, CIO of Union Hospital, will speak on the role of a dedicated security analyst in achieving HIPAA/HITECH compliance as part of the Security and Access of Healthcare Data track. (Tuesday, May 5, 9:00 am.) She will also chair a session on the changing privacy environment.

Clinical Informatics News: Marcia, Tim, you are doing a co-presentation in May at Medical Informatics World on “Empowering Patients and Researchers With Patient-Reported Data.” Why did you choose this topic for this audience?  

Marcia Nizzari and Timothy Vaughan: In our time at PatientsLikeMe (six years for Tim, and two for Marcia), we have found it exciting to be part of a company that is so focused on the patient. We've both spent many years in a variety of biomedical research, pre-clinical, and clinical positions, but PatientsLikeMe is the first that is all about the "patient voice." This sort of data is incredibly powerful and should have a first-class seat at the table in determining treatments and outcomes. PatientsLikeMe has over 25 million medical data points collected from over 300,000 users with 2,300 or so conditions, so it provides a rich source for deriving insights that are not necessarily available through other channels, such as EHRs. It is not a well explored space yet, and should be on people’s radar.

​​What do you all see as the main challenges in promoting the "patient voice"? 

Aside from the lack of acceptance of the accuracy of patient-reported data, one of the tough technical problems is mining free text for semantic information. It's always frustrating to a computer scientist when some of the most critical information is locked in text fields that are essentially semantics-free. As a social network, we have a tremendous amount of critical information about treatments, symptoms, and side-effects of treatments that are stored as text in blogs and journal entries. We have a Health Data Integrity team of clinicians and pharmacists who manually go through that information for drug safety reporting, but we want to scale up that processing and unlock the value. 

​What is your advice to your colleagues?  

We’re looking forward to a world where patient-reported data are central to understanding the riddle of disease, and hoping that our colleagues are interested and curious about finding out more about this significant, new source of data for analysis and discovery. It is easy to become rigid in the ways we think about data and analysis, which can be self-limiting when new methods and ways of thinking have great potential.  

What are you looking forward to at Medical Informatics World besides your session? 

​The “unknown unknowns” are usually the most exciting aspects of conferences. We’re both very interested to learn about the frontier being explored by researchers and clinicians. Hearing case studies and “lessons learned” about what is working and not working is always worthwhile.

Clinical Informatics News: Anne, you are presenting in May at Medical Informatics World on “Justifying the Role of an Information Security Analyst.” Why did you choose this topic for this audience? 

Anne Lara: I wanted to underscore the critical importance of information security in all industries — especially the healthcare industry. In my community hospital, the creation of an information security analyst position provided an opportunity to focus efforts on information security activities and allowed a technician to advance in his career. In his new role the information security analyst’s efforts have been driven by the organization’s commitment to guaranteeing patient confidentiality, securing HIPAA compliance, and achieving Stage 1 and 2 Meaningful Use.

What are the biggest challenges now for CISOs and CIOs when we talk about privacy-security of healthcare information and patient data? 

The biggest challenges are determining who should have access to what patient data. The ever-present need to access patient information in order to provide patient care must be tempered by the importance of making sure that patient data is only accessible by those who have a relationship with the patient.

Looking at your role as a CIO in a hospital or healthcare organization, do you feel you and others like you are the right people to be leading the privacy conversation within an organization across clinical, financial, ops and IT? 

Most definitely. HIT/HIM professionals have not only the technical, but also the industry knowledge and expertise to provide the required information security organizational leadership. These professionals are accountable for data governance, data integrity, and data privacy, and have the responsibility to work collaboratively within and across the organization so that all members of the team become data stewards.

What is your advice to your colleagues about how to simultaneously ensure security while also allowing access to PHI? This is tough. 

Ask questions. Be diligent in establishing, maintaining, and monitoring controls. Make sure your clinicians understand the reason for the information security controls. Involve all levels of the organization in implementation and training.

What are you looking forward to at Medical Informatics World besides your session? 

I am looking forward to networking with my HIT colleagues and learning more about their best practices.